• Development and usability testing of a web-based psychosocial intervention for women living with metastatic breast cancer: Finding My Way-Advanced

      Beatty, Lisa; Koczwara, Bogda; Butow, Phyllis; Turner, Jane; Girgis, Afaf; Schofield, Penelope; Hulbert-Williams, Nicholas J; Kaambwa, Billingsley; Kemp, Emma; Flinders University; Flinders Medical Centre; Sydney University; University of Queensland; University of New South Wales; Swinburne University of Technology; University of Chester
      Purpose: Women living with metastatic breast cancer (MBC) face significant distress and unmet needs, yet few resources have been developed for this population. The current study aimed to develop and evaluate the usability of Finding My Way-Advanced (FMW-A), a web-based self-guided psychosocial program for women with MBC. Methods: FMW-A was co-designed through (a) adapting an efficacious online program for people with curatively treated cancer, and (b) receiving iterative rounds of input and feedback from a multidisciplinary co-design team including consumers, clinicians and academics. A think-aloud protocol was then implemented to test the usability of the resulting 6-module prototype, with women living with MBC accessing up to three modules with an interviewer sitting along-side. Participants were recruited until saturation of themes occurred. Data were analysed thematically. Results: Participants (n=8) were, on average, 65.3 years old, mostly partnered (n=5), retired (n=6), post-secondary school educated (n=6), with non-dependent children (n=7). Feedback fell into 6 themes. Positive feedback about FMW-A summarised the supportive and informative nature of the programme, supplemented by comments about broadly relatable content. However, one size clearly did not fit all: within themes, diverging experiences emerged regarding navigability, worksheets and layout. Participants noted that having/making time for the intervention would be important to program engagement. Conclusions: Usability testing indicated participants found content helpful and relatable, and identified significant pragmatic improvements to be made prior to further testing. Implications for cancer survivors: The development of FMW-A represents an important step in providing acceptable resources to support women living with MBC.
    • The Finding My Way UK Clinical Trial: Adaptation report and protocol for a replication randomised controlled efficacy trial of a web-based psychological programme to support cancer survivors

      Hulbert-Williams, Nicholas J; Leslie, Monica; Hulbert-Williams, Lee; Koczwara, Bogda; Watson, Eila K; Hall, Peter S; Ashley, Laura; Coulson, Neil S; Jackson, Richard; Millington, Sue; et al.
      Background: Cancer survivors frequently report a range of unmet psychological and supportive care needs; these often continue after treatment has finished, and are predictive of psychological distress and poor health-related quality of life. Online interventions demonstrate good efficacy in addressing these concerns and are more accessible than face to face interventions. Finding My Way is an online, psycho-educational and cognitive behaviour therapy intervention for cancer survivors developed in Australia. Previous trials have demonstrated Finding My Way to be acceptable, highly adhered to, and effective in reducing the impact of distress on quality of life, whilst leading to cost-savings through health-resource use reduction. Objectives: Our study will adapt the Australian Finding My Way website for a UK cancer care context, and then undertake a single-blinded, randomised controlled trial (RCT) of Finding My Way UK against a treatment-as-usual waitlist control. Methods: As much as possible, our trial design replicates the existing Australian RCT of Finding My Way. Following a comprehensive adaptation of the web-resource, we will recruit 294 participants (147 per study arm) from across clinical sites in North West England and North Wales. Participants will: (i) have been diagnosed with cancer of any type in the last six months, (ii) have received anti-cancer treatment with curative intent, (iii) be over 16 years of age, (iv) be proficient in English and (v) have access to the internet and an active email address. Participants will be identified and recruited through the NIHR Clinical Research Network. Measures of distress, quality of life, and health economic outcomes will be collected using a self-report online questionnaire at baseline, mid-treatment, post-treatment and both three- and six-month follow-up. Quantitative data will be analysed using intention-to-treat Mixed-Model Repeated Measures analysis. Embedded semi-structured qualitative interviews will probe engagement with, and experiences of using, Finding My Way UK and suggestions for future improvements. Results: Website adaptation work was completed in January 2021. A panel of cancer survivors and healthcare professionals provided feedback on the test version of Finding My Way UK. Feedback was positive overall, though minor updates were made to website navigation, inclusivity, terminology and the wording of the Improving Communication and Sexuality and Intimacy content. Recruitment for the clinical trial commenced in April 2021. We aim to report on findings from mid 2023. Conclusions: Replication studies are an important aspect of the scientific process, particularly in psychological and clinical trial literatures, and especially in different geographical settings. Prior to replicating the Finding My Way trial in the UK setting, some content updating was required. If Finding My Way UK now replicates Australian findings, we will have identified a novel and cost-effective method of psychosocial care delivery for UK cancer survivors.
    • Internet use and preferences among women living with advanced breast cancer

      Kemp, Emma; Koczwara, Bogda; Turner, Jane; Girgis, Afaf; Schofield, Penelope; Hulbert-Williams, Nicholas J.; Levesque, Janelle V.; Spence, Danielle; Vatandoust, Sina; Kichenadasse, Ganessan; et al. (Wiley, 2019-02-21)
      Despite high distress and unmet informational and psychosocial needs, and recommendations for development of advanced breast cancer (ABC)-specific resources, there remains a paucity of appropriate, accessible psychological interventions. This survey study examined internet use and preferences of women with ABC, to the gauge feasibility of providing an ABC- specific internet intervention. Most participants (83%) used the internet daily. Results indicated most women with ABC would find an ABC-specific internet intervention helpful, and that it would address gaps in current internet resources, including provision of strategies to manage treatment side effects and fear of cancer progression.
    • Online information and support needs of women with advanced breast cancer: A qualitative analysis

      Kemp, Emma; Koczwara, Bogda; Butow, Phyllis N.; Turner, Jane; Girgis, Afaf; Schofield, Penelope; Hulbert-Williams, Nicholas J.; Levesque, Janelle V.; Spence, Danielle; Vatandoust, Sina; et al. (Springer, 2018-04-24)
      Purpose: Women with advanced breast cancer (ABC) face significant adjustment challenges, yet few resources provide them with information and support, and attendance barriers can preclude access to face to face psychosocial support. This paper reports on two qualitative studies examining (i) whether information and support-seeking preferences of women with ABC could be addressed in an online intervention, and (ii) how an existing intervention for patients with early stage cancer could be adapted for women with ABC. Methods: Women with ABC participated in telephone interviews about their information and support- seeking preferences (N = 21) and evaluated an online intervention focused on early-stage cancer (N = 15). Interviews were transcribed and underwent thematic analysis using the framework method to identify salient themes. Results: Participants most commonly sought medical, lifestyle-related, and practical information/support; however, when presented with an online intervention, participants most commonly gave positive feedback on content on coping with emotional distress. Difficulty finding information and barriers to using common sources of information/support including health professionals, family and friends, and peers were reported; however, some women also reported not wanting information or support. All participants evaluating the existing intervention gave positive feedback on various components, with results suggesting an online intervention could be an effective means of providing information/support to women with ABC, given improved specificity/relevance to ABC and increased tailoring to individuals circumstances and preferences. Conclusions: Adaptation of an existing online intervention for early stage cancer appears a promising avenue to address the information and support needs of women with ABC.
    • Psychological support for patients with cancer: evidence review and suggestions for future directions

      Hulbert-Williams, Nicholas J.; Beatty, Lisa; Dhillon, Haryana M.; University of Chester; Flinders University; University of Sydney (Lippincott, Williams & Wilkins, 2018-09-31)
      Purpose of the review. Psychological distress and mental health comorbidity are common in cancer. Various therapeutic frameworks have been used for interventions to improve psychological wellbeing and quality of life in cancer patients with mixed results. This paper reviews contributions to that literature published since January 2017. Recent findings. The majority of new psychological intervention research in cancer has used Cognitive Behavioural Therapy or Mindfulness-Based Interventions. Cognitive behavioural Therapy has been considered a gold-standard intervention and recent evidence justifies continuation of this. Recent reviews call into question the validity of evidence for Mindfulness- Based Interventions. A smaller number of trials using Acceptance and Commitment Therapy, Meta-Cognitive Therapy, Dignity Therapy and Coaching have emerged, and whilst findings are promising, additional fully-powered trials are required. Weaker evidence exists for counselling, support-based, and Narrative Therapy interventions. Summary. Efficacious, timely and acceptable psychological interventions are a necessary component of comprehensive cancer care. There is some way to go before the evidence conclusively points towards which interventions work for which cancer groups and for which specific outcomes. Methodological limitations must be addressed in future trials; at the forefront remains the need for fully-powered, head-to-head comparison trials.
    • A systematic review of psychotherapeutic interventions for women with metastatic breast cancer: Context matters

      Beatty, Lisa; Kemp, Emma; Butow, Phyllis N.; Girgis, Afaf; Schofield, Penelope; Turner, Jane; Hulbert-Williams, Nicholas J.; Levesque, Janelle V.; Koczwara, Bogda (Wiley-Blackwell, 2017-05-16)
      Objectives: To summarise the evidence-base of psychological interventions for women with metastatic breast cancer (MBC), by mode of delivery (group, individual, or low-intensity interventions). To synthesise data regarding core intervention-elements (e.g., intervention duration) and context factors (trial setting, uptake and adherence, demographic characteristics). Methods: Four databases were searched (inception – May 2016): MEDLINE (OvidSP), PsycINFO (OvidSP), CINAHL (EBSCO), and SCOPUS; reference lists were examined for additional publications. Grey literature was excluded. Outcome data were extracted for survival, distress, quality of life, coping, sleep, fatigue, and/or pain, and summarised through narrative synthesis. Results: Fifteen randomised clinical trials (RCTs), reported across 23 articles, met inclusion criteria: seven group, four individual, and four low-intensity interventions. Overall, interventions improved distress (8/13 RCTs); coping (4/5 RCTs); and pain (4/5 RCTs). No evidence of survival benefit was found. For remaining outcomes, evidence was either insufficient, or too mixed to draw conclusions. Group programs had the strongest evidence-base for efficacy; individual and low-intensity therapy had insufficient evidence to form conclusions. Group interventions had longest intervention durations and lowest uptake and adherence; low-intensity interventions had shortest durations and highest uptake and adherence. Disparities in uptake, adherence and reach were evident, with the demographic profile of participants polarised to young, Caucasian, English-speaking, partnered women. Conclusions: There remains a paucity of psychological interventions for women with MBC. Those that exist have an inconsistent evidence-base across the range of patient-reported outcomes. Further research is needed to evaluate accessible delivery formats that ensure efficacy as well as uptake.